Since we’re still stuck in the hospital in somewhat of a holding pattern, waiting for the surgery date to arrive, I’ve been doing a lot of daydreaming and plotting. Naturally, inspired by the new year, new decade, and in part by the outpouring of support from all walks of my life, I’ve been trying to come up with a way to bring my worlds together and to be able to spend real time with people. Ways to show my appreciation and gratitude for their care.

I love to entertain and I love evenings spent enjoying food, drink, lively conversation and games. There’s a Barefoot Contessa episode where she’s in Paris and one of the expat chefs she cooks with explains that he and his wife started hosting weekly dinner parties where they welcomed strangers from their neighborhood as a way to get to meet people. I love the idea.

We actually started doing monthly summer dinners with a few neighbors last year that have been such a fun way to connect with the people around us. When I’ve mentioned this to other friends, the reaction is always one of surprise. I’ve found that quite a lot of people don’t really know their neighbors anymore, and if even they know them, they don’t socialize with them. I’ve really loved our dinners and look forward to this summer when we get back to it!

While I’ve been here contemplating things I’d like to do in the new year, not resolutions, mostly actions, my husband shared a Facebook post from a colleague who lives in New Jersey (his company welcomes people working remotely so their staff are all over the country, and a couple even outside the country). She and her husband starting hosting monthly pasta dinners when they purchased their home as way to entertain, meet new people, see existing friends, and make use of their new home. I loved it and wanted to know more about how they came to do this. Turns out they were inspired by a blog post on Serious Eats, where a couple decided to do a weekly Friday Night Meatballs dinner.

The point of the evenings is to bring people together not to impress everyone with your culinary prowess or to spend a week preparing for these evenings. It’s about keeping things simple, sharing your space and time connecting with people in your life and connecting people in your life with each other. The mix of guests can be forever changing even if the meal itself remains the same, dinner after dinner. Evenings can end up with lively games and other fun simple entertainment – impromptu karaoke anyone?

I’m dreaming of being home and figuring out how this idea can find its way into our routine. One of the greatest gifts of Cole’s spinal surgery journey has been the recognition that we have a big community of people who care about us. I really want to welcome them into our real life and implementing a regular dinner night seems like a perfect way to do just that. I can’t wait to see who will actually join us! I really hope we have a revolving mix of people open to the magic of togetherness!

It’s hard to believe that 2019 is coming to an end – not only 2019 but the decade. It’s hard not to have this past month define much of 2019, but the reality is there have been a lot of things that happened in 2019 that are to be celebrated. Perhaps looking back, our current hospital adventures will be celebrated too. At the very least, our survival of them!

One of the things I’ve worked on this past decade is to be more open to asking for and accepting help. Somewhere in the last few years I started going to a special needs moms support group, which started opening me up to exposing myself. I also have a couple of dear friends who encourage the same of me and it’s transforming my psyche. I’m definitely a work in progress and will probably always be such but learning to be open to change and vulnerability have impacted my life in more ways than just as a mom.

I’m not good at resolutions so my interest in the start of a new year doesn’t really lie in committing myself to do this or improve that. The usual things like devoting more time to wellness (fitness/healthy eating/sleeping), finding balance in life, being my best self are ongoing endeavors. A couple of years ago I challenged myself (along with a friend) to try to do new or different things throughout the year. That too is something I hope to continue to explore. I was gifted a guitar for Christmas this year so learning to play is on the agenda – I have some lofty songs I hope to eventually master! I also want to challenge myself to write more – whether it’s this blog, short stories or even letters to loved ones. The practice is cathartic and I dream of one day having something published, making the practice even more important.

I see 2020 being the start of a movement where I strive to be more present with my time, care and interest in my family, friends and others. I greatly appreciate the simple, but intimate joy, of spending time with people I care about or am interested to know better over shared meals, experiences and time. I don’t feel like I do it enough though and really want to have impromptu meals, game nights, afternoons hiking with friends. I’m at an age where life feels more fleeting. An age where both peers and parents are leaving us or are facing health challenges. Time shared is so much more valuable than any purchased gift. My perspective of this value has deepened as I’ve aged and I feel strongly about drawing my community more into my everyday life, holding them dear and near, celebrating nothing and everything.

On that note, slightly in advance, here’s to a bright 2020! I wish you all a glorious new year filled with promise, joy and love!

Today is Christmas Eve. We’ve been living at Children’s Hospital Los Angeles (CHLA) since December 4th. Cole’s surgery has been rescheduled due to a cold he caught here. If all goes well and he stays healthy for the next weeks, it will be January 6th. We thought by January 6th we’d be well into healing but have hit bumps all along the way.

Christmas Eve is Cole’s favorite holiday. For seventeen of his Christmas Eve’s, we’ve gone to my brother’s house to celebrate with our family and extended family, usually my sister-in-laws siblings, their kids and her dad an his wife. Sometimes her half siblings and their children join as well so there’s 20-24 people gathering together for a night of fun. We arrive with a non-gender grab bag gift, ready for a great night. The evening starts with cocktails and appetizers as everyone tumbles in. Lots of catching up and lively chatter.

Eventually we all take our assigned seats and the feast begins. It’s a traditional roast beef and Yorkshire pudding meal with two salad choices, two veggies, mashed potatoes, au jus, horseradish and lots of yummy wines. It does not deviate. Convivial conversation abounds as we all devour the delights. Once we’re done eating, we migrate to the living room were we all don crazy Christmas hats that my brother has collected over the years. Some are Santa hats, some silly ones, some Hanukkah ones (we’re a multi-cultural family). We then choose our day of Christmas and sing a rousing, often terrible Twelve Days of Christmas.

While we’re singing, someone sneaks out and throws on a furry, plush Santa suit and beard and appears just as the singing ends with little gifts for the younger ones. Over the years it’s been most of the adults, and more recently the eldest of the cousins. It’s silly but depending upon who is Santa that year, can be quite funny.

Following Santa’s visit, we settle back around the tables with cookies and sweet treats and take an annual holiday trivia quiz to determine the playing order for Dirty Santa. Once we set the order, the game begins. Starting from low to high, someone selects a grab bag gift. The next person can either steal (maximum of three steals per gift), or choose a wrapped grab bag gift, and so on. The coveted gifts get stolen until they can be stolen no more. Gift cards and tech gadgets are popular.

At this point it’s nearing 11:00 pm and everyone’s winding down, heading home, getting ready for Santa and the next day’s festivities. In Cole’s mind, this is the perfect night.

Sadly, this year we’re stuck at CHLA. It’s a fantastic hospital to be stuck in if you find yourself stuck in a hospital on Christmas. But nevertheless, we won’t be with the rest of our crew and one of us will wake up at home alone (me) tomorrow because only one parent can stay the night and it’s my husband’s night. We were gifted a little faux tree this morning complete with twinkle lights and few ornaments and have a festive collection of holiday stuffed animals that have been gifted to Cole by thoughtful visitors lending further to the holiday feel, though it somehow still doesn’t quite feel Christmasy.

Cole seems to fluctuate between being happy and sad when reminded it’s Christmas Eve. I think he might rather just have the next two days pass without much fanfare as we inch closer to the January 6th date. Tomorrow I’ll bring a festive bag, left by Santa, with his gifts and hopefully it will be a cheery day.

Cole is having spinal fusion surgery on December 4th. The surgery itself is arduous – about ten hours under and a full week of hospital recovery. He’ll have his spinal cord straighten and supported by two titanium rods from pelvis to the top of his spine when all is said and done. It’s not an uncommon surgery for people with cerebral palsy, who are largely wheelchair bound. Over the course of his eighteen years, Cole’s spine has very slowly curved more and more, until the past year and half where it exponentially grew more severe seemingly with the onset of puberty. The right side of his pelvis is nearly touching his right side rib cage.

As much as I loathe the idea of putting him through another long surgery and painful recovery, the implications of the scoliosis worsening are far more concerning. It can have a significant impact on his overall health, including breathing (his seems to be a little compromised already) and heart issues. Plus he’s likely been living with a fair amount of discomfort for a while.

I know other families who have been through the surgery and ultimately, no one has yet to regret doing it and the benefits have been truly impactful in terms of improved quality of life for their children. So it’s an incredibly difficult no brainer. From our previous experiences with major surgeries, I know that once Cole has mostly recovered and resumes his regular routine that the much of the hellish procedure and recovery will quickly become a distant memory. Cole’s very resilient in this respect, which makes us the same.

Several years ago when Cole spent a summer recovering from a huge hip surgery that left him bedridden for two months, I put out a challenge of sorts on Facebook to all of my FB Friends whereby if someone sent Cole a card, note, joke, movie recommendation, really any sort of mail, he would write back – and he did write back to about 150 people all over the world. It was amazing and it was the best diversion during recovery and extended our support network exponentially.

Christmas is Cole’s favorite holiday. Our traditional Christmas Eve event at my brother’s house is literally his favorite day of the year and his most favorite evening. He also loves holiday music to such a degree that I’ve had to limit the listening window to start at Thanksgiving and run up to New Year’s Eve. He loves sending holiday cards. So my thought for his recovery this time is to challenge everyone to send Cole a holiday card and he’ll send one back. It will make him so happy and hopefully help ease the post-surgical pain, discomfort and boredom.

A friend recently told me about a study that concluded that the chronic stress special needs parents experience is akin to the stress experienced by combat soldiers. It’s a shocking comparison but the reality of the continued level of care of a special needs child adds complexities to the lives of the parents for their rest of our lives. I get it. My son is eighteen now. Nothing about his care has changed in terms of his needs except I’m now eighteen years older and he’s a lot taller and heavier.

While we strive to provide him with as much independence as possible, and with a rich life outside of home and school, it doesn’t come easy. As parents of special needs children know, nothing about our children is easy. We fight for adequate, affordable medical care, inclusive education opportunities (for which we have annual IEPs that require a lot of prep and determination to ensure that our child’s rights are protected, his needs met, etc.), we work hard to maintain friendships and social opportunities, we bathe, dress, transport, transition, entertain, feed, tend to personal needs, fight bureaucracy and support our children in every way imaginable. We do it with love and care because we love and are dedicated to our children.

The considerations that go into planning anything (restaurants, friend’s houses, travel, long outings) is daunting. You don’t just jump in the car and go (and you can’t send him off in someone else’s car because you need a wheelchair accessible van). You need to ensure that your destination is wheelchair accessible, that you have access to reasonable bathroom accommodations for changes, that your friend’s house doesn’t have a steep drive way with multi level floors or steps leading up to the house, that the restaurant can accommodate a wheelchair, and more.

I also recognize how fortunate I am to have a partner who shares all of the parenting demands. He’s highly involved and supportive of both Cole and me. Not all families have the luxury of two able bodied, loving, involved parents.

But it isn’t easy and there’s rarely a break. Our kids needs don’t change as they age. While typical peers are walking, talking, dressing themselves, making friends, feeding themselves, showering, toileting, going to school, learning to drive, going out with friends, attending concerts or movies or dating, we are still taking care of our kids. When typical peers are heading to college and moving out on their own, we are still taking care of our kids needs. We’re just a lot older, which makes some of it harder.

The physical nature of caring for a child like mine is that it puts a lot of stress on your body, especially as it ages, between the transfers, transitions, lifting (my son, thankfully, is small – just around 80 pounds), and the eighteen years of interrupted (and sometimes complete lack of) sleep. There’s no one else who is going be there, so you just do whatever needs to be done, no matter what state you are in.

A lot of us have kids with medical issues on top of everything else, so when my son exhibits some reflux occasionally, I begin to worry that his Crohn’s Disease is acting up, and when he’s scheduled to have a major surgery that has significant risks and requires a lot of juggling to get pre-op appointments and insurance issues lines up, there’s stress. When he comes home wet from a leaky g-tube, is there blockage, does he need a replacement, or incompetence? There’s also financial stress in that therapies, equipment, supplies and medical treatments, medications and procedures all come at a cost. And more stress.

My husband and I both work full time as well so there’s the added pressure of ensuring that work doesn’t drop and that we maintain good standing at our respective jobs. We are fortunate in that we both work for companies that have flex time and where we can work remotely if needed, like from the hospital while our son is recovering from a surgery for a week. We are fortunate that we have insurance, even if it’s not always easy to access certain benefits.

We don’t have family around who can physically help with childcare. We have found a couple of people who work really well with Cole and who, when available, are happy to spend time with him and to support us as well. Of course, at a big financial cost.

The idea of any kind of balance in your life when you have a 24/7 child and work full time is laughable. There’s not a lot of “me” or “us” time in your days – ever. The notion of self-care is just that – a notion – not a reality. As vital as self-care is, it’s just not something finds its way into daily routines with ease or consistency.

It’s hard to maintain friendships but I strive to do so because my friends are my sanity and lifeline. Without regular girl’s night outs, I’d lose my mind. The conversations, laughter and love feed my soul. It’s also hard to keep a marriage healthy when, as a couple, we have virtually no home time alone and rely on occasional date nights for some much-needed adult time. At this stage in life, having your social life still dictated by childcare availability is stressful and simply requiring childcare adds an additional cost to going out. Childcare often ends up costing more than the actual date. But no going out alone sometimes is not an option. It nourishes us and gives us much needed time together. It’s not a luxury. It’s a necessity.

Following the conversation about the stress comparison, I had what became a heated conversation with someone close to me who I thought had a sense of what my life is like and understood the pressures I live with and the total long term impact and worry exists in my life. Was I ever wrong. Instead of compassion about my concerns regarding the upcoming surgery and particularly how hard the recovery will be for Cole and us, I was admonished for getting upset and raising my voice. My heart broke.

While I don’t need or want recognition or accolades for doing what any parent would do in the same circumstances, a little understanding and care goes a long way. I love my son to the core, and I love being his mom. Nothing is more important to me than him being happy and living a life that is rich, full of experience, love and joy. But in that existence, we as parents, also need to have our own little bits of pleasure, peace, and ourselves. Without it we would implode.

I’ve been solo-parenting quite a lot these past couple of months as it’s one of my husband’s big travel seasons. He’s been jetting from conference to conference with just a couple of days home between. The biggest burden for me is the push to leave early on work days in order to get home before Cole’s bus returns around 4pm. When home, my husband is usually the bus greeter because he has a flexible schedule and works just twenty minutes from home. I work in Santa Monica, which on a good day is an hour drive and on a bad one up to two hours (truly, just to go nine miles!!). I digress…I could bitch about traffic and rude, unkind drivers for days even though I try very hard to be zen about the commute!

So other than the pressure to get home for the bus, and missing my husband, I kind of love having the time alone with Cole. We start each day with 5:30 cuddles while he has his breakfast, and then plot out the day while getting him dressed and ready for the bus. He leaves laughing and happy and I sneak in a little exercise, coffee, shower and head out to the office. When the bus returns I get to learn about his day, give him a shower (which now includes a shave or two each week!), and then hang out with him until dinner and bedtime. We talk to his dad, sometimes to a grandparent or two and watch some of our favorite shows (Ellen, Modern Family repeats, baking competitions, Queen Eye) and then bed, sometimes later than we should. On weekends it’s baseball, dance class, time with friends – sometimes mine, sometimes his, errands, cooking and more hanging out and staying up later than we should. It’s relaxing, not wildly exciting, but completely soul filling.

I’m not suggesting it’s better than when we’re all together, it’s just special because I don’t usually have the afternoons with him and I don’t necessarily do all of the weekend stuff every weekend when there are two of us to split things up. Being on our own, just the two of us, taking care of each other while his dad is away, brings us closer. It allows us to just sink into our own routines that I think help him to deal with his dad being away. If everything were just the same, it would be harder on him. He loves his routines with his dad and definitely prefers some of them to me – like showering and shaving – but by approaching the afternoons with our own routine, it helps to not miss that it’s not what he does with his dad. In Cole’s world, there are certain things that require a specific parent whenever possible.

As much as I love our family three, I’ve come to embrace and even need the occasional times when it’s just me and the boy…

I took a basic watsu training class this past weekend, spending the better part of Saturday and Sunday in a 95-degree shallow pool with five other women, who were also taking the course. I didn’t know much about watsu, other than Cole’s aquatic therapist was also learning it and thought it would be useful for me to learn the basics, so I could use it to help stretch and relax Cole at home in our pool. I love water, and I love learning new things – especially when it’s something that can help Cole.

I nervously showed up Saturday and met the others. Three were women who were already in the aquatic therapy business, wanting to expand their practices and knowledge, one was a mom, who is considering a watsu practice when her four kids are all in middle and high school, and me. We were joined on Sunday by a woman who does energy work already and has already completed about her watsu training.

The first half hour we learned about watsu and its benefits. Watsu is a form of aquatic therapy that combines muscle stretching, joint mobilization, and shiatsu massage. It’s done in chest deep warm water, where the “receiver” is continuously supported by the “giver” (or therapist) while back-floating. The receiver is rhythmically and passively cradled, moved, stretched and massaged by the giver and water. Watsu promotes deep relaxation and, in my experience, euphoria.

After the basic introduction we all got in the pool and watched part of a training video, so we could see an actual practice. Then we began learning the stance, moves and an understanding of the symbiosis of the process. We worked in pairs throughout the day, switching between being the giver and the receiver and working on different bodies. The better the giver can connect and adapt to each receiver (every body is different, not just in size but in flexibility and trust too) the better the experience will be. By the end of the day we had learned the entire basic sequence and practiced each element over and over. We all left feeling empowered and connected by the day.

Sunday we all reconvened and immediately got back in the pool. We were joined by a woman who does energy work and has already completed about half her watsu training hours. Having a sixth person allowed us to all work on our technique and practice with each other while our instructor could move through the pool and give us each more hands-on training and support. We all gave and received three full hours of treatment that day. It was amazing. Unlike anything I’ve ever experienced.

There’s something almost spiritual in the practice of watsu. The relationship between the giver and receiver and water is harmonious in a way that at times you feel at one. Breath plays a part in watsu as it does yoga. There are quiet times when the giver synchs their breath to the receiver and as one you rise and fall slightly in the water as you breathe. There’s a deep sense of relaxation and rejuvenation resulting from the treatment and connectivity that transcends the treatment. I’m completely enthralled with watsu. I plan to take more training even if I don’t complete a program for certification. I just want to be able to give Cole (and other family and friends) the best experience I can.

It’s one of my favorite song lyrics from the Leonard Cohen song Anthem, but a long standing notion that the crack or imperfection is what gives us a path to greater existence. Rumi, the Sufi poet and philosopher, has a similar oft quoted line, “The wound is the place where the light enters you.”, invoking the same idea of imperfection being a road to enlightenment.

I feel like this is the endless journey I have encouraged myself to pursue. It’s one of acceptance and betterment and I hope to travel it for the rest of my life. For most of my teen and adult years I’ve struggled with confidence, self-love, and frequently battled myself and losing. I tend to be my own worst enemy and harshest critic. I allow my insecurities to shout the loudest and engage them to idly defend me when I feel put upon or angered. They’re not my best voice because they prevent me from seeing myself or allowing me to be vulnerable. They’re cruel and lash out. They deflect.

I’m trying to teach myself to step back and react from my heart even if it means admitting I’m culpable in an action or behavior or that I myself feel hurt or scorned by someone or an action. Decades of unfettered reaction are slow to turn around but it’s an effort worth taking because when I’m successful, when I approach conflict with calm and sincerity, it’s resolved amicably nearly always.

I want to be a good example for my son, an example of someone who has flaws but is constantly trying to evolve and resolve and flow. I want him to see that he can be fluid in this way and open his heart and mind to be kind and caring even in conflict or stress. I want him to know that the pursuit of enlightenment is something more personal and internal for every one of us, but that the result of this endeavor results in a gentler, kinder community and world.

When I was a kid, I was often as described as “nice”. I kind of hated it because I likely wanted to be thought of as the pretty one or the cool one or the smart one. No, I was the nice one. In retrospect I greatly appreciate the compliment. We should all strive to be the nice one. We should all let the light shine through our cracks…

I’ve gone through another period of inconsistent writing and I find I miss the outlet terribly. Life gets in the way of my creativity! It inspires it as well but when writing is more the hobby and work and family responsibilities fill much of each day, hobbies take the back burner. Nevertheless, I’ve challenged myself to make a bigger effort to sneak in a bit of writing each day. The truth is, it benefits my mind and soul, so it’s a valued effort.

I turned 54 on the 4th…While I love birthdays, particularly other people’s birthdays, I don’t generally feel the creeping up of the years to be bothersome. This year though it did make me feel introspective. Though I do have some self-awareness and keen sense of the things I need to do maintain my health, sanity, and joy, I do have a tendency to shirk some of the responsibilities that are required to maintain myself. This year I made a decision that I will shirk less and go through my 55thyear taking better care to make time to exercise, write, enjoy my family and friends and to step out of my comfort zone as much as possible.

I’ve actually been attempting to try new things and put myself out there throughout the past few months. Nothing radical, small steps to expose myself to new experiences, places, and people. It’s been a wholly positive endeavor. I took a girl’s night out grilling class and wound up sharing a table with two women, both of whom are speech pathologists and one of whom had coincidentally worked at my son’s school for a brief time. What are the odds?

I also took a chance and applied to a writing program that Imagine Entertainment just launched. Beyond the lengthy application, that included a video component, I had to provide a project I would like to develop (I have a TV series idea that I’m working on) and other writing samples. I was not among the handful selected (over 4,000 writers applied), but I feel proud that I put myself out there and gave it a shot. I plan to try again for their next session in February. It will give me some time to get my ideas in to a better format and who knows??? Another coincidence, my company moved into the same building as Imagine a couple of weeks ago!

I look forward to having a successful self-motiving, self-aware, self-caring, self-sharing year. I want to be present and well for myself, my family, my friends and for any new challenge or experience that comes my way.

I had this flash of anger this morning that quickly turned to sadness. I pulled up behind a car with a license frame that said “The Best Moms Get Promoted to Grandmas”.

Seems innocent enough but it smacked me in the face. Another reminder of what might have been in my parenting experience.

I don’t generally feel sorry for myself or for the lost parenting experiences I have because I am the mom of a (often whispered) special needs child. From day one my parenting experience has been unique and different from what I had imagined becoming a mom would be like.

Let me be clear, being Cole’s mom is the singularly most amazing experience I’ve ever had, but it’s not without bouts of mourning some of the milestones and joys that typical families celebrate. I’m human. The moments of sorrow are fleeting and run the gambit.

I could run through the list but it would bore you, or give you cause to pity me and there’s nothing I like less than boredom or pity. The fact is there exists a long list of the joys and successes that fill my heart. They too are unique and different from what I had imagined but every bit as relished.

Becoming a grandmother is one that I hadn’t thought much about since I’m way too young to be a grandmother! HA. I just hadn’t ever registered that I won’t become a grandmother. Seeing that license plate frame pissed me off, and then I was stuck behind it as I crawled the miles through the canyon to work. It just kind of sucked. I’m a best mom…and shall remain so until the end…